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I have Becker Muscular Dystrophy and was diagnosed at age 13. Despite this, however, I have gone on to do all of the following things. I share them not to brag but to show you that it is possible to achieve more than is imaginable:

Play cello since age 5

Play basketball & tennis for grade school and high school teams

Play in the high school orchestra

Participate in student government, clubs, and competitions throughout high school

Travel the world by myself and visit places like Africa, Australia, and Europe.

Road trip across the United States for tennis and for fun.

…and many more things.

Most muscular dystrophy books are scientific. I decided to focus this online muscular dystrophy “book” on the things I have learned and experienced while dealing with muscular dystrophy.

Writing a book about muscular dystrophy has always been on my list of things to do. I even answered a college application essay that asked, “If you could write a book about anything, what would it be?” by saying I’d write a book about my experiences dealing with muscular dystrophy. So now, whenever I get a chance, I will be posting things I’ve written in the past or new articles I have ideas for. If you have questions or an idea for a post, please post a comment on this page or contact me and I’ll do my best to get back to you as soon as possible. My goal is to one day assemble all these posts into a real book about life with muscular dystrophy so any feedback is appreciated.

Whether you have muscular dystrophy, have a child that’s just been diagnosed with muscular dystrophy, or just know someone with muscular dystrophy I hope the information on this site is valuable and lets you know that it’s possible to live a full, productive, exciting, and happy life even despite having muscular dystrophy.

12 Responses to Home

Wow that is CRAZY I wish I could do all the things you have done I don’t have the skill nore brains to do that. Im one year less than you and I could never go to college right now nothing is impossible but with your determination I brains you can do it and theres nothing wrong with me

Hi,my son. 5 years old just got diagnosed an MD patient two days ago.Tomorrow he will take DNA test to see which type.I am really happy to see this online book about MD because I want to cope well with this.our whole life will change now I just hope to do the best for my son..

I am so glad I found your blog Dan! I am glad to be able to join you in raising awareness about Muscular Dystrophy! Thank you for your support and for being a fellow BMD blogger! I consider you to be a great friend! – Brad

I stumbled upon your blog. I just wanted to share that Ii 2007, I answered an ad on Craigslist of a 25 year old girl with Muscular Dystrophy that was looking for a roommate and someone to help her. At the time that I answered the ad, I didn’t know what her condition was, only that she was in a wheelchair. Well, I accepted the assignment and lived with her for two years. It was two of the best and purposeful years of my life. She was diagnosed at the age of three and not expected to live past age six. She’s been in a wheelchair since she was 13. She is now 29 years old. I moved back to my home town of Atlanta in August 2009 but flew back to Chicago two months later to attend one of the most amazing weddings that I’ve ever seen in all my 53 years. Her husbands LOVES her so much and they have a great relationship in spite of the challenges. She only has usage of one arm. Everything else has to be done for her by a team of people. She cannot physically move the rest of her body parts.

Her health has really declined since I left though. She actually stopped breathing a couple of months ago and her husband had to resuscitate her. Now she has a trach, a nurse, a caregiver, who lives in a family owned condo in the same building, her sister, mother and her husband all trained to take care of her. She can no longer be left alone and is in bed a lot. Whereas, when I moved in in 2007:

she’d had graduated from grad school a year before
she was working two days a week and caught the train home by herself
she would stay at home alone during the day and I’d be home after work to help
she had a very active life even though she could only use one arm
she would fly (with an aide) a couple of times a year for vacation

She has had a great life though in spite of her disability. I’m glad that I had the opportunity to meet her in this lifetime. She left a footprint that will be etched in my heart forever. I just finished putting together a photo book that captured the two years that I share with her and her family.

I’ve had SMA (Spinal Muscular Atrophy)since birth. I’m now 48 years old. Nothing has ever stopped me from living a normal life. Been married for 24 years.have a beautiful daughter of 24.with God nothing is impossable. Remember you can do anything you want to do. Believe in yourselves and no you can do it
.

Thank you so much for your blog. My 18 year old son was diagnosed with Becker’s in August 2011. He has declined rapidly since. He has dialated cardiomyopathy and has arterio-venous malformations throughout his body (unrelated to the MD as far as they know). He uses a walker, but will soon need a wheelchair. Your posts have given me much needed insight. This has been so difficult on him and the rest of the family.

Thanks so much for making this site, it truly is inspirational! We just found out my dad might have muscular dystrophy and your lighthearted and upbeat articles have definitely helped me! I have been put at ease by your optimism, and I know now I can understand a little better what he has/ will go through and how to be there for him God bless you!

I have enjoyed reading your site. My 7 year old son as dx Dec. 2010. I am still trying to wrap my mind around it. I have not told my son the MD word, he knows something is different and that his legs may always be this way but I am afraid of calling it MD. I fear his older sister may google it if I use the word and the google sites are harsh. I struggle understanding his discripiton of how he feels….some days he is sprinting across the yard and others he is crawling on the floor in pain. Lately he has described it as he cant feel his legs or that they feel funny. I was wondering if you have in words of wisdom to help me understand how to help him the most and some insight on how he feels, emotional and physical. Thank you Lissa

Hopefully someone responded to you or you were helped at some point with your issue. I was diagnosed at 5 and was informed of the nature of my MD as my family was learning about it and dealing with the ramifications. It’s important that your child know what is going on with him. Kids are resilient and can deal with more than you can! I don’t mean to scold you, but imagine how frightening it must be for him to feel like something is wrong with him and not know what it is. Give it a name, own it, discuss with him what you guys are going to do about it. Don’t be afraid of MD. Over time you will see what a blessing it can be.

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The information contained in this online muscular dystrophy book is for informational purposes only. Please seek the consultation of a doctor if you have specific medical questions about your type of muscular dystrophy. The articles and stories on this muscular dystrophy blog are copyrighted by the author and owner of musculardystrophybook.com and can only be reprinted or used with permission.